Tuesday, January 26, 2010

Stressed Out!

As you can imagine, I've been dealing with a significant amount of stress since my accident. I would say my day to day stress level is relatively high compared to the average person. I say this based on my past experience and the comparison in the types of problems or stressors I dealt with before my injury versus now. I can also cite examples based on all my friends and family. I realize that all emotions or moods are relative; given that each person has different coping skills and life experience. Stress is not something we can really quantify so it's hard to compare stress levels between people. Not to mention, one man's problem could be another man's blessing.

My entire perspective on life now is different from before my accident and in many ways I feel like a completely different person. My accident changed me both physically and mentally. I think of my life in two parts and feel as though I have lived two separate lives. It's as if the "old Christina" died June 5, 2005 and the "new Christina" emerged. Obviously, this is figurative, because I didn't actually die. However many of my old thought processes and view points "died" and have been replaced with new ones. I imagine even if I were to be cured and on my feet again, that the experience of living with paralysis will have left me forever changed.

I have to admit that despite all the hardships and loss I've endured, the accident made me a much stronger person mentally. I've been able to deal with things that I never thought I could. The human spirit is pretty amazing and I even surprise myself at times. Most people think they know how they will react to stress or trauma, but I've found that a lot of people don't give themselves enough credit. I know for sure that if someone asked me how I'd react to my situation before I was injured, I would have said I'd rather be dead. There have been many times I've thought that since my accident. However, there is a huge difference in imagining something versus having experienced it. Prior to my accident I had never so much as broken a bone. My closet "brush with death" would have been a sprained wrist, four stitches or perhaps my old driving habits. In the past I imagined giving up would be easy in comparison to living with paralysis, but the fear I felt those seconds or minutes I spent under the water that night changed all that. I felt no peace or comfort when I was drowning. There was no white light or sense of calming. In those few moments, I felt overwhelmed with fear, sadness and fear. It's hard to let go of that fear, especially knowing what I went through in the hospital. The thought of returning to that state terrifies me. I was naive in thinking how easy it would be to just give up. The cliche "ignorance is bliss" rings true when I analyze my thoughts before my injury. There's no way of really knowing how much stress you can handle unless you are faced with it. For me, the experience of coming so close to death has made push to stay alive. My driving force is based on wanting to fix my mistakes and my hope for the future. Every time I think I can't possibly go on another day I try and remind myself of everything I've been through and everything I've somehow overcome.

I feel as though paralysis is the source on ninety percent of my stress and it is frustrating trying to figure out ways to cope. There is no guarantee that my paralysis will ever be cured, therefore I live with the fact that no matter what I do there are certain problems that might not ever go away. That is why I say that I have more stress than the average person. The only true solution would be a cure to paralysis. It is especially maddening when people suggest medication or talk therapy to me. I've done both with little success. I take medication, but still feel depressed and anxious. How can I not, given my condition? Isn't it normal to be bothered by paralysis? Who on earth (of sound mind) would be happy to be sick or have a chronic illness? I think it's only logical that my situation bothers me and find it useless to think I'll ever be completely satisfied this way. If there is no remedy for the source of all my problems, all I can do is find new ways to deal with secondary issues created by the underlying cause. I'm sure most people with chronic illnesses can relate. It's difficult to cope with symptoms or outlying issues, when you know you can't get rid of the root of the problem. It can become so overwhelming at times, because I know no matter how many days I get through, there is another day of the same stuff waiting for me. My paralysis effects everything; until it's cured I will always face certain obstacles and stress.

So many of life's stress factors have solutions or resolve themselves with time. Relationships, financial troubles, raising children and even grief can be worked out over time; the pain dulls or solutions are found. In my situation, there are many stressful things that I need to do just to stay alive. As much as it bothers me, I don't have the luxury of moving on, or getting over it. I'm faced with the consequences of my accident day in and day out. Although some things that used to bother me seem ridiculous to me now, at the time they seemed valid. I try and keep that in mind when I talk with family and friends. I can see how easily someone in my situation could slip into cynicism and bitterness. It's hard to be sympathetic when your problems seem so grave in comparison to the people around you. I can't tell you how often I've thought, "I wish those were my problems." It's at those moments I have to remind myself that most of my friends and family will never truly be able to see life from my perspective and I shouldn't fault them for that. I try and think about how I might have reacted before my accident and try my best to recall my past. I push myself to make an effort to take a genuine interest in my loved ones lives. I value them and don't think it's fair to drag them down with me or belittle their problems (regardless of how insignificant or shallow they might seem to me). No one wants to be around a grouch or someone in a constant state of self pity.

I've found ways to not only cope with my paralysis, but how to mask a lot of what I'm going through. In some respect I feel it's not fair to those around me, even if I start to feel overwhelmed by everything I've kept bottled up. Most times I feel disenchanted and see no point in discussing my problems. The majority of stuff that bothers me is directly related to my paralysis such as, needing help with every single little thing. I never get a break from people and never feel like a truly have privacy. I've been injured now for over four years and still haven't figured a way to deal with needing help with highly personal things, such as going to bathroom, being bathed, fed and dressed. Outwardly, I'm not breaking into tears every morning or going into hysterics, but on the inside there's a torrent of emotions running through me. If I do express my discomfort, most people try and brush it off or down play it like it's no big deal. I understand there aren't many right answers or advice to give. No words can ever make me feel 100% better. In fact, most of the time I find myself getting annoyed and/or frustrated with the person, especially if they are able bodied. My able bodied friends and family sometimes think they can imagine what it's like to be paralyzed, but they can't. It is one of those things that you have to live through to understand. The problem with imagining something is that you are limited to drawing from the experiences you've had. There is no experience you could have that compares to certain aspects of paralysis. Often times I can't even find the words to explain what I'm feeling, because it's unlike anything I ever experienced on my feet. It can be very frustrating, because no matter what I use as a comparison, it's just not the same . Sure, you could try and simulate the experience by restraining your limbs; to experience the discomfort of having to have help, or feel the sense of vulnerability. However, such a simulation doesn't even begin to truly mimic what it's like to be paralyzed. A good example of this is how nurse's aides often have to "ride" in a Hoyer lift to help promote empathy for their patients. Although some people might feel nervous at the thought of being suspended in the air, it's nothing close to what it's like for someone like me. For starters, an able bodied person can grab onto the machine for security. I have no way to stop myself from falling or brace myself if I do fall. Secondly, an able bodied person can feel the sling beneath them. I have no sensation below my chest and therefore, if I can't see what's going on it feels as though the rest of my body does not exist. Not to mention the fact that someone taking part in a simulated exercise knows that there discomfort is only temporary. If I knew for sure that I'd be back on my feet, it'd give me a tremendous boost of strength and motivation. It's the difference of an innocent person serving a short jail sentence and being on death row. In both cases the innocent person is being unfairly punished, but the person with a designated time frame has the advantage of knowing that it's temporary. If I knew the date of when a cure will be found I would have the peace of mind in knowing what I'm up against. A set time frame gives you something to look forward; there is an the end. Even if that magical cure date was beyond my lifetime at least I'd have an answer. My situation overwhelms me at times because of the uncertainty of ever getting cured. Granted, my accident is an example that, despite set plans, no one ever really knows there future. Plans give us the illusion of control over our lives, and there are times when life throws in surprises. However, there are certain definites, just as I know for sure that my birthday will be on July 4th, it would be awesome to know when there will be a cure.

One of the many bad things about stress is that can have a direct impact on your health. Stress, like many emotions, it is not limited to just effecting your mood. I think keeping all of my stress bottled up is having a negative effect on my body. Lately, my aides and I have noticed that I'm losing hair. Having long, thick hair that is prone to knots means I'm accustomed to losing a certain amount everyday, just by brushing it. Recently though, it's been much too much to be normal. I know it could be from a dietary deficiency, but I doubt it. My diet is well rounded with fruits, veggies and protein and it hasn't changed drastically in any way. My medicine and environment are stable, so I'm thinking it's got to be stress related. I've also been battling acne since my accident. My skin used to be near flawless, which I had chalked up to good genes. Now I'm beginning to wonder if other factors (like medicine) were keeping my skin so nice or if the problem is only related to my current situation. I have several theories as to the cause; stress being number one. I have been going to a dermatologist and trying various treatments, but none have been very successful. My body has already been through so many changes because of the paralysis and now it seems I'm creating more problems by stressing out. I know emotion/mood has an effect on health and healing, but it is near impossible for me to eliminate the stress, anxiety or sadness I often feel. My hair and skin are not only proof of stress, they are now also a new source of stress. I feel faced with a double edged sword.

I've decided to attempt to lower my stress level by writing letters to a few people close to me. I think some of the things that are bothering me could have solutions, if the people doing them are willing to compromise with me, or change. Although I don't particularly mind arguing, I'm terrible at approaching situations where I have to tell someone they are doing something that bothers me. I'm fine once the ice is broken, but I struggle to bring up the subject. I have the most difficulty when the issue effects me specifically. In other words, if you did something mean or bothersome to my friend, I have no qualms about opening my mouth immediately. I'm fine at speaking up to help others, but I stink at sticking up for myself. I often just bite my tongue or let the frustration roll off my shoulders. I can forgive easily, so minor annoyances often get overlooked. The problem is, if I ignore or avoid things when they are small, they tend to snowball into something big; making it even harder to address or fix issue. It is the one area that I have a hard time expressing myself. It's especially worst with adults and even more so the closer you are to me (relationship wise). Writing down my thoughts gives me the comfort of being able to say almost anything. I also get satisfaction in knowing I've said everything I wanted to say, without getting interrupted or forgotten. So, I'm hoping to break the ice with a few people, about a few issues that are resolvable. I'm hoping the letters will open up the dialog and that I'm able to get a little relief.

Tuesday, January 19, 2010

Report about spinal cord injuries in Haiti

I just read this report by ABC http://abcnews.go.com/Health/Wellness/haiti-spine-specific-medical-aid-doctors/story?id=9554088&page=1 (the Christopher & Dana Reeve foundation just posted it on their Facebook).The report addresses the issue of spinal cord injuries due to the earthquake in Haiti. I'm sure the number of spinal cord injuries is staggering, considering the magnitude of devastation. I'm really pleased to see that there are initiatives under way to try and provide care to all of the survivors. I only wish (as does everyone, I'm sure) there were a way to get the medical care to survivors faster.I've been thinking about this specific problem ever since the earthquake occurred and wish I could do more.

Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.

I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.

My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts. 

Friday, January 1, 2010

2009: A Year in Review

2009 was a very busy year for me!
I had my work exhibited in two galleries. The first exhibit was held at the Arts Unbound gallery, from July to September. During that time, I also participated in a filming of an episode of the show Soul Survivors. The show is about people that have had traumatic, life changing experiences and how they have overcome them. The show is produced by Ebru TVEbru TV is currently available through the cable provider RCN (unfortunately this provider is not in New Jersey), online on the Ebru TV official website and via satellite (not Direct TV, an actual satellite dish that uses specific coordinates). Apparently, EbruTV producers discovered my story through my involvement with the Association for Mouth and Foot Painting Artists and contacted me through them.The episode is about my accident and the impact it's had on my life; as well as how I use art to cope with my situation and help others by raising awareness. We filmed the episode on two separate occasions, which included a sit down interview and painting demonstration at my apartment and at the reception for the Arts Unbound exhibit. The episode has already aired on cable (RCN), and is now available to download and watch online. I'm waiting for permission to include the video on my site as well. Despite my ability to find a million flaws in myself; I'm very pleased at the final result. I'm hoping to share it with as many people as I possibly can! I think they did a wonderful job in putting my story together (there are just two mistakes on the captions, which include: the date of my accident and the fact that I was familiar with pool). I'm hoping to use the video as a teaching tool, in my efforts to raise awareness.
This past September to October I had a solo exhibit at Kean University (my alma mater). The exhibit featured about 15 of my paintings and was held in the student gallery. The exhibit was a big hit! I was so pleased at the turn out for the opening reception and am continually greatful to my friends (mostly ex-professors of mine) in the Kean community for their support. I got to know a lot of faculty and staff when I was an undergraduate student and have remained in touch with many of them. As an added bonus, all incoming freshman received flyers about the show and information about spinal cord injuries. I worked as a freshman advisor for three years during my years at Kean and was thrilled at the opportunity to reach out to so many people, especially college freshman who are in the most common age bracket for spinal cord injuries. News 12 (NJ cable news station) also filmed the exhibit. I'm working with John Bathke, who is a reporter for News 12 and host of his own show, called On the Scene. The show focuses on local artists, actors and musicians. I was filmed at the gallery and here in my home, similarly to Soul Survivors. I'm still working on the painting for that show and look forward to seeing it once it's all put together. I will of course, let everyone know when it is due to air and I'm waiting to hear if it can be included on my website.
As for 2010, I will be participating in another Ebru TV show called Blank Canvas and continuing to paint. I'm hoping to exhibit more in the future and work on maintaining and improving my website. In the end, all my efforts are to help raise awareness and support for a cure to paralysis. I'm praying 2010 will bring about exciting breakthroughs and new treatments, ideally a cure.